Dad and I knew the REAL value of these drugs. Why didn't the bean counters?

Three years ago, in support of this newspaper’s campaign, I wrote a piece about the experience of my father, his Alzheimer’s, and the wonderful extra months of lucidity that Aricept gave him.

It’s thrilling to now be able to write the words: We won.

Finally, the lunatic, penny-pinching decision of the National Institute for Clinical Excellence (NICE) in 2007 to restrict the only known medicine to slow this ghastly disease has been overturned.

'Extra months of lucidity': Rosie Boycott with her father Charles in 1999, whose life was improved by the drug Aricept

But of course, just thinking about this takes me back to the moment when my own father was diagnosed with the disease. It was late autumn of 1998 and my husband Charlie and I were in Dad’s doctor’s surgery in Ludlow, Shropshire.

We’d all known for a long time that there was something wrong with Dad’s memory but it is impossible to say exactly when his lapses stopped being something that his grandchildren giggled about and turned into something more serious.

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The warning signs had been building up: He even went missing for 24 hours on one occasion when he got terribly mixed up travelling to Denmark to spend Christmas with my sister.

Even so, as I sat in a consulting room, I wasn’t remotely prepared for the finality of the doctor’s words: ‘I’m sorry, your father has Alzheimer’s.’

He paused. ‘He’s pretty far gone, I think he’s going to go downhill fast.’ I remember clutching Charlie’s hand. We were to be married in nine months and the thought that my dad wouldn’t be with us was overwhelming.

It has to have been one of the most extraordinary medical decisions of recent years

I asked how long he’d got. ‘I’d say that he won’t know much of anything by next spring,’ the doctor answered. It would be too late – our wedding was in July.

While there was no changing the doctor’s diagnosis – dad’s dementia would, in time, lead to increasingly bizarre behaviour, followed by a zombie-like condition and then death – he was planning on prescribing him the one drug that he said might slow the process.

In my pocket was a prescription for Aricept; this was in days when it was still routinely prescribed by the NHS. The following day Dad started the course of medication.

The results were quite astonishing. In the next 12 months or so, he enjoyed a more or less unbroken succession of ‘good’ days – days when he was calm, dealing with his memory loss in a fatalistic way, rather than raging so ferociously against the dying of the light.

Eventually, the drug’s effectiveness was overtaken by the advancing disease and he stopped taking it. But those months were so precious.

Aricept is one of three medications known as acetylcholinesterase inhibitors used to treat the symptoms of Alzheimer’s. There are currently 465,000 people living with Alzheimer’s in the UK (dementia as a whole affects more than 750,000) and a further 62,000 will develop the disease each year.

That’s more than half a million people – right here, right now. Yet only about 10 per cent of them are currently prescribed drugs.

Ruling: NICE has now overturned its decision to restrict Aricept

Nice claimed that £2.80 wasn’t ‘cost-effective’, an idea that, to my mind, is as short-sighted as it is wrong.

From 1998 to after the Millennium, my father coped on his own, aided solely by a single carer who came in every day to make sure he was eating well.

Compare that cost to what he needed later: Two carers, then three, then round the clock, then hospital, then a care home which cost almost £40,000 a year. Who on earth has the right to say that Aricept wasn’t worth it?

It has to have been one of the most extraordinary medical decisions of recent years.

As one leading gerontologist has put it, no one would suggest a diabetes sufferer should wait until their illness is severe before prescribing medication.

And yet, for the last three years, doctors have been forced to tell early-stage sufferers that they can have treatment only when their illness worsens.

The decision also flew against what clinicians and researchers working with Alzheimer’s say – that the key to getting the most benefit from these drugs is to start patients on them early, and use them continuously.

Because an Alzheimer’s sufferer, facing the gradual but inevitable disintegration of their mental faculties, needs to make arrangements as to how they will spend the rest of their lives.

As one leading gerontologist has put it, no one would suggest a
diabetes sufferer should wait until their illness is severe before
prescribing medication

They need to give their power of attorney to someone they love and trust. Even a few extra months of relative sanity can allow the patient time to console and support their loved ones.

On our wedding day in early July, 1999, my father was there, beaming and happy. He wasn’t well enough to make a speech, but he joined in the party with gusto.

A friend later told me that my father had said to her, proudly and sincerely, that he had four daughters, one of whom was a vet. (I was, at the time, a newspaper editor and my only sibling, my sister living in Denmark, is a teacher.) It didn’t matter.

What mattered to me – and to him – was that he could be there, surrounded by a large, extended family that saw him as its patriarch, and he was able to hold his own and be part of the celebrations. Without the Aricept, I am sure that this would have been impossible.

The further outrageous cruelty of Nice withdrawing the treatment was the effect on the diagnosing of Alzheimer’s.

I tried to imagine his kindly and compassionate doctor making my father’s diagnosis but then not being able to offer even a shred of comfort or hope.

Small wonder then, that in these last three years, doctors have become reluctant to make the diagnosis and patients have been even less willing to come forward to discuss their symptoms.

No one – the doctor or the patient – wants to confront a situation where a diagnosis of such magnitude is accompanied by the words ‘there is no treatment available’.

I can do nothing but applaud the Mail’s campaign, and feel proud that my late father and I have played a part in it, but it is truly shameful that it has taken all this time, money and effort to reverse a decision which should never have needed to be taken.

Advances in science are made on behalf of all of us and we pay our taxes in order to benefit – equally – from these advances: Without means-testing, postcode lotteries or wrong-headed cost-cutting.

In the case of Alzheimer’s, one thing is for sure: More and more of us, as we continue to live longer, are going to suffer from it.

Drugs like Aricept provide a comfort, to sufferer and family, to which no one can attach a price.